October 2018
Newsletter

On the 27th of September 2018, the Pontifical Academy for Life of the Vatican released a white paper calling upon all in global health care to treat suffering, not just diseases, by including palliative care as a part of health care. In view of the fact that Catholic institutions account for 27% of all health care in the world, this is of particular importance.

Pope Francis had always been a strong advocate of palliative care. In 2015 he had said, “I encourage professionals and students to specialize in this type of assistance which is no less valuable for the fact that it is not life-saving. [Palliative care] accomplishes something equally important: it values the person[1]”.

The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican) dedicated to the promotion of human life, including medical ethics. In 2017, the PAV launched an international project called “PAL-LIFE: An International Advisory Working Group on diffusion and development of palliative care in the world” to advise on how the Catholic Church could assist in continued PC development at the global level. 13 experts from various parts of the globe participated in the working group, including one from India, Dr M.R.Rajagopal. representing Pallium India.

The white paper calls upon hospitals and health care institutions to integrate palliative care service and education, including access to essential medicines, to all health care. The recommendations of the white paper has been published in the Journal of Palliative Medicine and can be seen at https://www.liebertpub.com/doi/10.1089/jpm.2018.0248

One potential impact of this white paper is the removal of a huge chunk of pain and suffering in the country particularly because the Catholic church runs more than 300 hospitals and more than 1500 health centres across India. Pallium India has a memorandum of understanding with Catholic Health Association of India (CHAI) to improve access to palliative care and we are in the process of training a cohort of professionals for this purpose.

Pallium India thanks the Pontifical Academy for Life and CHAI for this opportunity to work with them on this important initiative.

The UN Interagency Task Force on the Prevention and Control of Noncommunicable Diseases (UNIATF) at its 10th meeting in Vienna in February 2018 initiated the UNIATF award to recognize those making an outstanding contribution to NCD prevention and control. The first awards were presented during the “Friends of the Task Force” meeting in the margins of the Third High-level Meeting on NCDs at the United Nations General Assembly in New York, on 27 September 2018.

Two awards have been awarded to the Ministry of Health and Family Welfare, Government of India. One in the category of: Outstanding Ministries of Health and the second in the category of: Outstanding individuals in Ministries of Health. This has been awarded to Shri Manoj Jhalani, Additional Secretary and Mission Director (NHM) for Ministry of Health and Family Welfare, India. (Image courtesy: MoHFW, Govt of India)

In a surprise move, the central government promulgated an ordinance on September 26, 2018, to remove all the office-bearers of the scam-tainted Medical Council of India (MCI) and appoint a seven-member Board of Governor (BoG) to run the medical education regulator for the next one year.

The BoG will be chaired by NITI Ayog member Vinod Paul, a former professor at the All India Institute of Medical Sciences, Delhi.

Swarga Foundation celebrated their fourth anniversary and the launch of the calendar “Women of Substance” – featuring twelve differently-abled women achievers from across India – at an event in Coimbatore on September 29, 2018.

It was a proud moment for Pallium India as well, since our volunteer, Ashla Rani is one of the women featured in the calendar. Ashla writes:

Imagine that you are watching a spell-binding dance performance and you fall in love with the passion you see in the eyes of the performer. Later, you are told that she cannot hear the music, but she has learnt it from her guru through interpretation!!! She loved dancing from her childhood. In spite of evident obstacles in her path, she and her guru found ways to learn the rhythm. When you are born with a talent and have the passion to take it forward, there is no limit to where you can reach! Prerana, (true to her name, which means ‘inspiration’) encouraged everyone to follow their passion and achieve what was possible, and even those that appear impossible …

It was an honour to be a part of Swarga Foundation’s 4th anniversary celebration and even more so to be featured in their calendar. It was an evening where everyone enjoyed EQUALLY. There were no differences even when each one was different in his/her own way.

On World Hospice and Palliative care day, October 13, 2018, Pallium India is organizing a visit for patients and families to “Magic Planet”, the magic-themed park in Trivandrum. We expect around 450 people to take part in the program. The expense is estimated to be ₹1000 per person. We request you to donate and support us in making this a memorable day for the people in our care: https://palliumindia.org/donate/ (For more information, please contact Babu Abraham: +91-9746745502)

World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world. The theme of this year’s World Hospice and Palliative Care Day is: “Palliative Care – Because I Matter!”

This year is the centenary of Dame Cicely Saunders, founder of the modern hospice movement. So it is fitting that this year’s World Hospice and Palliative Care Day theme draws its wording from her iconic quote: ‘You matter because you are you and you matter until the end of your life’.

This theme was chosen because it centres on the experience of people affected by serious illness, looking at what matters most, including the often-overlooked financial impact of palliative care needs on individuals and households. The theme also contains elements of human rights and justice, asking: “If I matter, then why am I not getting the care I need?”

Dr M R Rajagopal, founder chairman of Pallium India, has been conferred the John Mendelsohn MD Award the other day at an event held at The University of Texas MD Anderson Cancer Center in Houston, Texas, USA. Rajagopal is the first recipient of this award from a developing country.

A month after the floods in Kerala, most people have returned to their homes and are trying to pick up the pieces of their shattered lives. The task is daunting, the problems seem insurmountable, even for the most able-bodied among them. But consider how the odds stack up against those who, in addition to having lost everything, do not even have the health, strength and mobility needed to claw their way back to some semblance of normality.

On the 31st of August, Shemeema, one of our nurses, visited the home of SK, aged 39, in Pathanamthitta Dist. She says:

“He used to drive an auto rickshaw until an accident four years ago left him paralysed. He lives in a small two-room shack with asbestos roofing, with his wife and two school-going children. With no means of livelihood, they had been eking out an existence with the help of neighbours and friends.

“These generous benefactors have all themselves been badly affected by the floods. SK’s house was inundated and badly damaged. All his belongings were lost – not even a bed for him to lie on could be salvaged. When our social worker and I met him, he was inconsolable, and we were struck almost speechless by the hopelessness of his situation.

“To add to his woes, he has an inflammatory wound in his coccyx, for which surgery is urgently required. He is praying for help – of any kind – from any source”.

LET’S NOT LEAVE THEM ADRIFT…

As part of our flood relief and rehabilitation activities, Pallium India’s social workers have been on the ground in some of the worst affected areas. Their primary objective is to assess palliative care and other health-related needs among the victims. This database will be shared with concerned local authorities with whom we will work hand in hand. Our team also provides clinical support and distributes preventive medication.

A video that went viral during the recent floods in Kerala was the one of the ‘human footstool’ in action, or should we say, in service!

This young man, Jaisal from Tanur, Malappuram, rendered invaluable and timely help, in a manner that was so innovative, resourceful, but above all, self-effacing. Jaisal lowered himself as low as he could into those swirling, murky waters, so women could use his back as a stool, to step into a rescue boat which would take them to safety. Like so many other unsung heroes that the floods produced, this giant of a man sprang into action with no thought for his own health or physical well-being.

We truly hope we get to meet him some day, to tell him how much we admire and respect him, for setting such an amazing example of humanity for the entire world.

The recent floods in Kerala have left in their wake untold misery and suffering in terms of loss of lives and destruction of property and livelihood. The worst affected were patients undergoing treatment or receiving palliative care, who ranged from children to the aged including people with disabilities or those bed ridden.

I learnt a lot about this tragedy from the print and electronic media about how, many good samaritans including a large section of the youth came to the help of the distressed people, working with the government, other NGOs and relief agencies. I had never had the experience of working under such conditions and it was my innate desire to do so. I was therefore very happy when I received the instruction from my organization, Pallium India, to undertake a survey of the affected persons and prepare Pallium India (working with Govt agencies) to do what needs to be done with special regard to the suffering patients.

On 21st August 2018, our team comprising of two social workers (Anil from the state Social Justice Dept and myself), one psychologist and one volunteer visited Ms.Alphonsa Chacko (65) at a home stay facility in Fort Kochi. She used to live with her nephew Gypsun, in a place called Kuthiyathodu in North Paravur. Following an accident that she met with 6 years ago, she could not walk without assistance. The cataract in her eyes greatly weakened her eye sight. Her parents as well as siblings had passed away some time ago.

Alphonsa had no inhibitions in narrating their nightmarish experience. Flooding in their area was common; every year during the monsoon season, the administration sent out alerts asking people to relocate until the waters receded. That is why, they took the alert as a routine one and assumed that the water would recede soon. However, panic set in as the water reached the first floor. Although her nephew coaxed her to go with the rescue teams who arrived in boats to rescue them, Alphonsa was too scared to get into the boat and decided to stay back. Although Alphonsa urged him to move to safety with the boat crew, he refused to leave his aunt alone and decided to stay with her.

They moved to the second floor. No more help came. Before long, the rising water level forced them to climb to the terrace. They spent two days there, enduring hunger and thirst. In the mean time, Gypsun had been frantically texting his friends for help. His effort paid off when a Navy helicopter came to their rescue. They were air lifted and dropped off at the naval airport at Thevara. After receiving emergency care, they were shifted to the home stay in Fort Kochi by the police personnel. At the request of Alphonsa, Anil the social worker had her temporarily shifted to a Home Care facility.

Two weeks ago, I came to know that she had undergone surgery for cataract and that she is gradually regaining her eye sight.

This experience was a new awakening for me and I hope to continue our efforts to bring succor to those suffering.

The highest number of cancer cases in India is detected from Kerala, followed by Mizoram, Haryana, Delhi and Karnataka, while it is the lowest in Bihar. In 2016, cancer incidence rate in India was 106.6 per 1 lakh people, while in Kerala it is 135.3 per 1 lakh people.

The Cochin Cancer Research Centre will soon begin in-patient services, integrated home care services under pain and palliative care and an intensive preventive campaign. District Collector K. Mohammed Y. Safirulla, who is also the Special Officer for the cancer centre, has said in a statement that specialists required for the services would soon be appointed.

September 28th marks my 4 years in Pallium India. I have done so many things in these four years; things I had never imagined I could do, even in my wildest dreams. There is so much to be thankful for…

It was the three-person army of Ganga aunty, Dr Sangeetha and Haridas sir who took the lead in searching for a place for me to work and live. After several months, Pallium India showed itself to Ganga aunty in the form of a small news item about a paraplegic rehabilitation center. Thus began the next phase in my life.

Now when I retrospect, two things stand out that helped liberate me from my cocoon.

First, the unconditional support of my colleagues. I was in a world where everyone helped each other, in whichever way they could. Second, the real wings in my legs in the form of an electric wheelchair. When Dr Chandrika asked me, in her sweet, quiet tone, how much it would cost for an electric wheelchair, I never thought she would find a sponsor from her own circle of friends and family. Nor did I foresee the freedom it was going to give me. Finally, when Mr Abhishek bought me one, it opened the doors to a completely new world. Till then, all I received was pity from strangers, as well as their non-stop queries, “What happened to you? Can’t you walk? Not at all? For how long?” (all in one breath) followed by a few sympathetic pats on the shoulder.

Once the wheelchair arrived, they started seeing me with new eyes and their questions changed to: “Aha!! Is this battery operated? How much does it cost? How do you charge this? How many kilometers can it go after charging once?” Children who usually avoided me began to approach, curious to see how I operated the electric wheelchair. I made friends with them by allowing them to try the joystick. The wheelchair gave me not only the freedom to move around but also freedom from sympathy (most of the time).

As years pass, things fall into routine and we take life for granted. This wheelchair has been my companion for 3.5 years. Yes, I do use it daily without thinking too much about it, but there were so many occasions when I felt grateful to be moving on my own instead of depending on others to push me around. And when I sat down on the evening I completed four years at Pallium India, this was the first thought in my mind. Every single act of kindness touches people much more than we can even imagine.

Pallium India started its first batch of 10-day foundation course in palliative medicine in Silchar, Assam. The participants for this course are medical professionals of Assam Rifles. The project, called North East Alliance Against Cancer, has been organized in collaboration with National Cancer Grid and Assam Rifles.

Congratulations, Dr Chitra Venkateswaran

Heartiest Congratulations from all of us at Pallium India to our friend Dr. Chitra Venkateswaran, who was conferred the Kairali People Doctor’s Award by Kairali TV Chairman, Shri Mammootty, on September 29, 2018.

A lack of medical facilities is the cause of death of nearly 27 percent of the nine million people who die every year in India, according to government data. The government’s own figures show India is spending a mere 1.15 percent of its GDP on public healthcare. The global average is 6 percent.

Some 2.4 million Indians die of treatable conditions every year, the worst situation among 136 nations studied for a report published in The Lancet.

Poor care quality leads to more deaths than insufficient access to healthcare–1.6 million Indians died due to poor quality of care in 2016, nearly twice as many as due to non-utilisation of healthcare services (838,000 persons).

PARTING SHOT

In the third week of August, Pallium India’s Advocacy Manager, Babu Abraham was deputed to Alappuzha and Pathanamthitta districts to assess the needs of those medically affected by the recent floods in Kerala that took a heavy toll and rendered a vast section of the population homeless and jobless that forced them to lead a life of penury at least in the foreseeable future.

Babu writes:

Before I left for Alappuzha and Pathanamthitta, I received a call from Cheshire Home in Trivandrum asking me to go over there. On arriving, I was pleasantly surprised to know that it was to receive gifts from the inmates of Cheshire Home (who constituted the aged and otherwise disabled patients) for the flood affected populace. The remarkable thing about this kind gesture was that these gifts were actually Onam gifts that they had received from their well wishers. It also included items that they had produced for sale as part of their rehabilitation process. With the unfortunate situation that they themselves were in, they could well understand the plight that their homeless and suffering brethren were going through. They got their satisfaction in giving for a noble cause at the right time, something they would not have got out of Onam this time.

I was also stumped by an old lady at the Cheshire Home, who whispered in my ear, “I have nothing else to give but my 5 months pension of ₹5,000 that remained unspent, which please accept. I would want to give more, but this is all that I have.” I was moved by such kind gestures. Who wouldn’t be? These are but a fraction of what our brave heroes amongst the fisher folk, armed forces, police, NDRF, civil society, government and the youth have done to save people from the clutches of imminent death and bring them relief.

In Alappuzha and Pathanamthitta, I worked with District authorities and that of the Social Justice Dept viz. Dr.Prathibha PTA DPM, Ms.Sheeba, KAPS, AKWRF, Fr.Manoj, World In Need, Shafiq, Kuruvilla etc who guided various NGOs operating there to fan out to places such as Ranni, Pandalam, Tiruvalla, Kozenchery, Chengannur, Aranmula etc.

For the first time in my life, I saw the rich and the poor suffering together. They were all housed in camps as a mixed lot. There were only 4 toilets for 1,000 people as against a single rich household having more than 4 toilets for themselves. It was impossible to enter the toilets. But, the authorities had their limitations. This must have been the most expensive lesson in human relations. The camp held many people who were wheelchair bound. They had lost their wheelchairs, beds etc in the floods and their condition was very pathetic with some of them having developed bed sores, some that needed plastic surgery. One such person was admitted to Pushpagiri medical college for surgery to be done free of cost by their charity wing. We have been approaching donors for wheelchairs and beds and have received commitment for 10 wheel chairs. Getting the rest will take some time.

On the whole, it has been a new awakening for me and, I am sure, for all of mankind.

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.